New Permobil Power chair Koala & SNAP swim therapy

I uploaded these in fast/low resolution.

We celebrate all our kids first mobility movements, rolling, sitting up, crawling...Hayden's mobility first happens to be driving without a permit!  Check out his smile.  He was so happy to go over bumps.  

Hayden got this custom camouflage colored wheelchair.  That way you notice him and not his wheelchair.  They don't make invisible just yet:).  It is such a joy to see him become more independent. This 350lb chair with a 3 yr old driving is like having a bulldozer in your home.  That is why we are practicing in the drive way.

We started the process last year in anticipation for this coming into our home and vehicle.  It really changes the family "normal".  I once cried at the thought of getting a wheelchair and now we are so very happy for the independence it is going to give my super cute boy.

One of Hayden's 5 daily/weekly therapies is swimming.  SNAP stands for special needs aquadic therapy.  Hayden was unable to relax or hold & control his breath.  Look at his progress since he started just a month ago.  He now kicks his legs with them stretched out and closes his mouth.  The added bonus at the YMCA is that Hanna can enjoy swimming too.

Wheelchair and HKAFOs

Some of you mothers and fathers know what I am talking about when I make this post...

6 therapies a week, full time private special needs school, lots of fancy custom expensive equipment, but seeing your 3.5 year old stand by himself for the first time...PRICELESS!

 First time standing up in HKAFOs (hip, knee, ankle, foot orthotics) not a problem and loved it.

These beauties cost north of $7,000.  

Thankfully our private insurance pays a portion for new every 6 months, while Medicaid picks up the tab.  Say what you want about government entitlement programs, for us Medicaid has been a God send.  

We would not be able to afford most of what it takes to help give Hayden the chance at a full life.  We are so thankful to all of you paying your taxes so that we can afford to provide for him.  Here is some of what your tax $ in Texas goes to.  

OK, I'll get off my soap box now.   I feel better about that PSA. 

How cute is that diaper tushy?!

 Second time got a little scared but here is how he looks.

 Hayden has had his new wheelchair for over a month now.  You don't even want to know what this cost.  It took 8 months before we got it in.  I am learning patience as everything of value is worth it.

 Hayden for the first time is learning independent mobility.

 Hayden playing serious with catch.  We continue to work on co-ordination.

Hayden turns 3! Carnival party

 This year we invited all of Hayden's Rise school class and a few other long time friends to our back yard Carnival.  We were blessed to have a nice warm Saturday in February.  Mom was a gypsy and dad was a clown

Scott was the best grilling clown around.

 2 of Hayden's buddies with Spina Bifida came to help celebrate.  Hayden's BFF Josiah came and shared gold fish & Savannah had a good time running around.

Silly Sparkels provided magic and face painting for all the kids.

Hayden became Batman & Hanna was a butterfly.

There were many games for all abilities to participate.  Above was the prize table with many prizes based on the # of tickets.  Cotton candy, circus cookies, necklaces, bubbles, candy, rubik's cubes and cars.  Unfortunately we had no ticket keeper to be on prize patrol:)

Treats were plentiful with carnival soda, apple juice, mint & lemon water, mini caramel apple bites, lolly pops, gold fish, swedish fish in blue jello, funfetti cake batter chex mix, hamburgers and hot dogs.

The popcorn machine and cotton candy was great fun.

Hand painted marshmallow popcorn cupcakes were the treat along with Hayden's BFFs mom, Angie's, custom carnival cookies.  She made a couple dozen and they were gone in a flash.  They sure looked cute!  Wish I had eaten one.

All abilities games:

Lion Tamer Photo booth in the big top tent (set up and lent by a dear friend)

Bean bag toss & ping pong toss

Lots and lots of bubbles...

playscape for pirates & flying trapeze 

Magic clown & pony rides

All of this was photographed by the lovely Gaga aka Grandma Mary Hanna who wasn't in any of the pictures but helped document this wonderful day for us.  We were also blessed to be able to freely host it as Hayden's respite nurse Christy (who moved to AZ) provided us with being Hayden's transporter.

Hayden loves all things that go!  Fire trucks, school buses, trains, tractors, cars.  He loved ALL his presents and they were all very thoughtful.

This last picture wasn't taken at his birthday party but at a friends.  My friend Michelle is the best face painter I have ever seen.  Just had to include it.

Finishing the NYC Marathon 2011 for SBA

This is the final update of the NYC marathon and fundraising for the national Spina Bifida Association. Again, words really do not express how much all of your kind donations and heartfelt words and deeds meant to us. Reflecting back on this past year of fundraising makes me realize just how many good, kind people I am blessed to know. My heart is full of gratitude to each of you and all of your encouragement. This journey has brought so much joy even through the pain of training and illness and injury. Every mile has been worth it.

Melyssa and I are happy to announce that we raised a combined total of around $7,500. That far exceeded our goal. This motivated us to run being supported with $143 for every mile.

For many of you who wish to know how it went, this is the best way I could tell you from my perspective. Emotions over the 4+hr experience ranged from humor, elation, praise, exhaustion, gratitude and on and on...

Made it to NYC with all our most wonderful family (L/R Mom, Julia, Gma & Gpa Williams, Hanna, Austin, Anna, Scott, Mely, Cate, Me & Hayden) had dinner & headed to sleep @ 10.

Woke up at 3am. Darn noisy Time Square. Caught bus @5:30. Made it to Staten Island. Bussed us in early enough with plenty of time for nerves and shivering cold before the start @10:10.

Small talk at the porta-potties. Short lines and still a little less disgusting early on. Mely met the youngest racer turning 18 on the race also from Montana. Trying to stay warm and eat a bagel. Met some of our team Scott, Liz, Kathleen and Sherrie, and even found fellow Austin Fit running friend Jennifer.  Feeling happy and excited.

Mile 0:  9:45, shed the clothes in dumpsters for Goodwill. Getting pumped. Still cold. Watched the wheelchair racers start.

Shot gun start and the elites were off with helicopter coverage.

We were the group on the left to the underdeck.

I'm...going to KILL... It!

Mile 1:  Mely and I run the bridge together. Beautiful view of the city from far off. Warmed up. Crammed with people. Garmin not working. Darn under deck. Running hard but not too fast. Gotta save it.

Mile 2:  Finally off the bridge.  Blasting my tunes. I think Mely is still next to me. No slowing down in this sea of people.
Mile 3:  No water stop. Don't want to get trampled. So glad I brought my own.  So much nicer than running in Texas heat and throwing up.

Mile 4:  Brooklyn... merge both running groups.  Have to get in a passing lane.  There's a Dunkin Donuts. I haven't been there in years. When this is over I want a donut.

Mile 5:  Finally a down hill.  Who is this famous person I am passing with the matching blond Lululemon entourage? Don't know.

Mile 6:  Where are my cheering family and how will I ever spot them? Where am I? What's a Borough? Can't believe all the people cheering?  Blasting my music.

Mile 7:  Move out of my way. Is that a runner taking pictures? Must get Gatorade. Keeping PR pace @ 9:30.

Mile 8:  Seriously when will this hill end?  Where are the porta-potties? No time for that line.

Mile 9:  1/3 way there. No I'm not going too fast. Feeling great.

Mile 10:  Is that smell sulfur or sewage? Is it just the smell of the city? Maybe that is me or is it all these people around me?

Mile 11:  Look at all these people.  I feel the love!

Mile 12:  Must not miss my family or the puff of the inhaler.

There is my family!!! I see their signs! I love you and needed to see you. Half way there.. One kiss and I'm off.  Sorry I can't wait for the pick mom.

Garmin said 9:30 average at over 12 miles just what I wanted

Mile 13:  Queens:  Where was my inhaler puff? Missed it but still feeling good.  Short bridge at half into Queens.  How many bridges do we cross anyway?(5)

Do you see my arms pumping?  Note I started over 40 minutes different from the elite runners official time.

Mile 14:  I see another big bridge coming.

Mile 15:  Bridge into Manhattan.  Garmin says 15.3 and OUCH! Left calf muscle tears, snaps and curls. Holy calf pain, Batman.  Keep going.  It's ok. I still have my right leg. Snap. There goes my right calf muscle and my PR time. Only a mere 11 miles to go.  I can do it.  Don’t walk. Keep running. 

Mile 16:  There are amputees and blind running out here.  The Achilles running group is so cool!

Mile 16:  I’ll walk through this water stop. Then no more walking. Yes, I know I’m “almost there,” lady who has never done this before. 

Mile 17:  Who are all these runners wearing determiNATION shirts? I am doing this for SBA and all those who donated their hard earned $ and are tracking me.

Mile 18:  Sponge!! Can I drink this? Fill up bottles.  Where is my family?  Must have missed them.  Its OK I get a down hill.

Mile 19:  Another bridge?!  Someone should have warned me about this course.  Best sign said "worst parade ever."

Mile 20:  Bronx...Stretch...walk it out. Come on! Yes I am shouting at myself.  Was that a 70 year old man that keeps passing me? I will catch him.  Only 6.2 more to go.

Mile 21:  Another bridge...why are so many people walking?  OK, pull over.  Stretch.  Just for a little bit.

Mile 22:  Mandy from team SBA passes me.  Go speedy Mandy!  My PR is shot with the minute I added to my overall pace.  I have determiNATION to finish this as strong as possible.

Mile 23:  Oh, made it to Central Park.  It should be so pretty now. I broke 4 hours!...for 23 miles.  Looking for my family again.  Just missed them, but they saw Mely.

Mile 24: Central park hill climb.  Yes there is a reason most people are walking.  Head down and hobble forward.

Mile 25:  Stop looking at the Garmin.

Mile 26:  Earphones out.  I hear Cate, G'ma & G'pa Williams!  Yes hi 5s and giving it all I've got!

Melyssa crossing

Adrienne crossing

 Mile 26.2:  Garmin says 26.5.  It's over.  I did it!

While team Hayden raised at total of more than $7,500, all 10 Spina Bifida runners totalled more than $48,500!!  While we did not raise the most $, we did have the largest number of donations and to me that means the most.  Advocacy and Spina Bifida education were my ultimate goal.  Remember FOLIC ACID & PRENATALS before you get pregnant!  That little pill may change a persons life.

While I didn't break my PR for time (the Kenyan winner did the whole race in the time I did half), I did make the New York Times.

My gratitude is great for my "Take That Team".  Thank you for paving the way and allowing me to run and train with you for the 2nd SBA marathon.  For your children who inspired you.  For all of those who suffer from the challenges of Spina Bifida who make us want to do more and better.

To my friends, thank you for letting me know the depth of your friendship.  I have never known I was cared for or felt such love and support from people other than family.  You can count on me any time.  Thank you for letting me count on you.  I know who my true friends are.

To my family, thank you for truly stepping up when we asked and we needed you.  Thank you for those who made the trip and for those of you who cheered us on from home.

Thank you to many of you who have never met us or Hayden but gave out of the goodness of your heart and circumstances.  You are the most surprising bunch.  My heart is truly touched and you make me want to be a better person.

Flamingos have flocked for many months from July to September.  From Austin to Billings.  It was an incredible uniting and bonding experience for our whole family united in doing good and charity for others in Hayden's behalf.

You may also view our NYC slide show by clicking below.

November 12, 2011